Appointments and Updates - October 1

I know, I know - I missed Monday's post...and we had some really big news on Monday...but I'm getting to it now :)

We went to the pulminologist on Monday annnnnnnddd..... YOU GET TO START DOING SOME TIME OFF THE VENT!!!! Short amounts to start with. AND we have to use a trach collar BUT it's a small baby step in the right direction. I was a bit concerned at first because when you were on the trach collar in the hospital it was because you were still on oxygen, but now you're not. The RT explained that it will just be for humidification, and that she has to show me how to set it up and use it, but that if I feel like you can handle not having the humidity for the short amounts of time that you will be off the ventilator, well she can't control what I do :) So, for now, we are trading one machine and big long tube for another machine and big long tube, which means I have to do some rearranging in your room (again), but it will hopefully be a temporary measure until we can show them that you do fine without it. The trial periods will only be while you are awake. Eventually, we'll have to address your apnea issue (yay for another sleep study) so that we can move in that direction.

I told the doctor about your fun non-lazy day Friday story and she seemed REALLY surprised that you did so well without a trach or ventilation for more than four hours. I don't think she really believed me at first when I said you kept your oxygen levels up and weren't fussing until they tried to put the trach back in. She seemed to be waiting for the bad part of the story when something went horribly wrong...but it didn't. She said she'd be talking to the ENT about what they think the next step should be with your trach.

Here's what the trach collar looks like - it just sits on top of the trach and pumps humidified air, which means we'll be soaking through the bibs as we give it a sufficient trial run:

Yes, you've really grown that much since April!

In other, more exciting news: we had a super busy weekend - with no nurse! Our Thursday nurse called in sick, we knew we wouldn't have a nurse Friday or Saturday and then our Sunday nurse called in sick also (lots of bugs going around!) so we didn't have a day nurse at all from Thursday until Monday....and we survived! Thursday was a pretty lazy day; we tried to get caught up on everything because of the busy weekend. Friday we had an early morning dropping off sisters for the County Fair Parade, then we went and picked a spot to watch and you fell asleep. And stayed asleep. Through the sirens, bands, horns, yelling, clapping...you snoozed.

And then you woke up and were not all amused by all the noise and people and excitement...

Later that afternoon we went and took family pictures with all five of us - FINALLY! We had gotten some of you and Sisters when you were five months old, and some of you, Daddy and me, but we still hadn't had the opportunity to get some of all of us together. I am SO excited to get some these printed to add to our photo wall. Right now you've only got one picture up there! Here's the teaser Aunt C put up until we get the disc with the rest of them:

(For those on Facebook you can see more of the pictures here - I'll post the others once we get the disc with final copies!)

Saturday was another busy day - we all went to help out at the 4H booth at the Fair, where you refused to take a nap! Then we hung out for a little bit with GiGi and Other Grandpa/ Blue Eyes/ Pops (Little Big keeps changing his name...), Nanny, Uncle B and Aunt K while Daddy and Sisters played around and rode the rides. Then we all went to dinner (and you still refused to take a nap) and then Uncle B and Aunt K came to the house for a little bit and you FINALLY crashed for the night!

You didn't want to miss anything but were SO tired!

In addition to the appointment on Monday, ST introduced a mesh feeder to you that morning to help you start strengthening your jaw muscles and learn how to chew up your food. You did awesome at getting the food out of it! (Same for this morning!) There was no hesitation at all - you knew there was food in there and you were going to get it out! You're doing so awesome with all of your feedings and she was so excited about how quickly you figured out the feeder!

That's all the updates for now, so I'll leave you with a cute video of you and Little Big playing in the kitchen while I was finishing up dinner:

9 Months! September 20

Happy 9 Months Baby Girl! You have had such a fantastic month - constantly growing, learning, and still impressing everyone!

You are spending a lot of time each day sitting and playing at your "desk". You've started working with blocks and learning how to stack things. Your reach is getting better and better, as is your grasp. We tried working on holding crayons, and got these great crayons thinking that they would be ok if you stuck the end in your mouth...but you ended up turning it around and sticking the crayon end in your mouth so we're holding off a little on that! They're a little bit of a softer crayon so you ended up with a lot of blue in your mouth.

You are still doing SO well with eating foods - the amount that you're eating is increasing and you are handling the foods much better in your mouth. You still have a little bit of work to do with your tongue movements but there's already been a lot of improvement since our visit to the clinic a few weeks ago. We did learn that you're not too crazy about pickles. Either that or you just really weren't sure what to think about something so different than what you've been eating! (And thank you Little Big for that nice ending...)

This week has been an up and down week. You had a low grade fever all last weekend, and we thought it was just some teeth coming in....but they haven't shown up yet. You were really fussy Monday and Tuesday and just wanted to be held and cuddled (which I was perfectly happy to do!) but started developing a cough Monday night. We did a few breathing treatments over the week but it didn't seem to help any so we actually spent your 9 month birthday at the doctors office. You were almost back to yourself Thursday and Friday and spent a lot of time playing with your new toys - you mastered getting the rings off of this toy in about 15 minutes!

Anyway, it turns out your have a slight ear infection so you're back on antibiotics; and they renewed your albuterol prescription so we can add that to your breathing treatments as needed. Also, happy day, Mama got a flu shot while we were there. Joy. Not quite how we planned to spend our day, but we survived it.

You are growing up so fast I don't even know what to do! There are days when I feel like things are going so fast that you'll be off to school with your sisters tomorrow and then we have weeks like this week where you just want to be held and rocked that remind me that you're still my Baby Girl. I love you so much and am so proud of you and how hard you're working! Keep fighting and keep growing!

Oh you know, just hanging out in the chair